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Communication technology and MND

Judith Duncan is a TalkLink client.  She was recently diagnosed with Motor Neurone Disease.  In this article Judith talks about the effects of MND on her life and the importance of maintaining her ability to communicate.  Judith uses an iPad with a communication app (ClaroCom) to communicate.  Judith continues to work as a professor at the University of Canterbury. She is committed to getting her vast knowledge of early childhood on paper. In gaining permission for this article to appear on our website Judith stated: “Anything that helps I am happy to share”. 

The following article was published at


Dr Judith Duncan

Judith Duncan’s mind still works – brilliantly, in fact – if you ask the early childhood fraternity, but “the mouth is the problem”.

“I just started tripping over my tongue – particularly words that had lots of consonants in them,” she says.

“And then I started noticing that my talking could not keep up with my head.”

In October, the University of Canterbury professor, who specialises in early childhood education, was diagnosed with terminal motor neurone disease.

She has been given “limited” time: Two years – max.

It is a hard thing to communicate. She gets upset, naturally, and speaking becomes extremely difficult.

“My head is screaming at you, but my mouth will not work.”

So she lets an iPad to do the talking. Her touch-typing skills come in handy.

“The hardest thing was facing not having a future,” says a robotic voice.

“We spend our lives looking forward and suddenly there is only now.”

The 50-year-old’s symptoms first appeared after a stressful year.

Her closest friend in Christchurch died from cancer, her mother-in-law died and her father was diagnosed with terminal cancer.

“I did not pay much attention until it got to the everybody-else-noticing stage,” she says.

“I put it down to a bit of post earthquake exhaustion and being overloaded with grief.”

In 5 per cent of motor neurone cases, Duncan says, “there is a genetic predisposition, but the rest of us . . . it is just bad luck. It is not an easy diagnosis to live with.”

Now she is in a “race against time” to get her knowledge of early childhood onto paper.

“Getting it right in early childhood is something that you cannot leave for others to do. It needs to be a society and community concern and we cannot wait on the politicians,” she says.

“[It’s] not about profit, it’s not about working mothers and it’s not about building the economy. It’s a society issue. If we get [early childhood education] wrong, all of us will suffer in the future.”

Duncan says she will keep teaching and writing “until my body will not let me”.

“Each time I hit a problem, they have another piece of technology to help me.”

Her husband, Frank Hakkaart, says his wife’s knowledge is too valuable to lose.

But despite her passion, her work is not their No 1 priority; it is their 15-year-old son – Lucas.

Hakkaart says Lucas’ humour “has been a saving grace for all of us”.

He has taken “great delight” in his mother’s “emotional lability” – crying or laughing outbursts, typical of motor neurone sufferers.

Christchurch’s early childhood fraternity, led by Te Tari Puna Ora o Aotearoa/NZ Childcare Association’s Rikke Betts, jumped at the chance to help the family, setting up a page on the website Givealittle to raise money for Lucas’ tertiary education.

More than $10,000 has been raised, with donations pouring in from across the globe.

Duncan insists any donations should help her son. “I have been able to follow my dreams,” she says.

Her eyes meet her husband’s. Hakkaart speaks for them both. “We want Lucas to follow his.”


Motor neurone disease is the name given to a group of diseases in which the nerve cells – neurones – controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die.

With no nerves to activate them, muscles gradually weaken and waste away, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

There are about 300 people living with motor neurone disease in New Zealand at any one time. Most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70.

In 90 to 95 per cent of cases there is no known family history. British theoretical physicist Professor Stephen Hawking was diagnosed with motor neurone disease when he was 21.

Hawking has since dominated his field of research, extending from the beginnings of the universe to the end of time. He is now in his 70s.

Source: Motor Neurone Disease Association of New Zealand

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Pariya Behnami
I have had a keen interest in Assistive and Augmentative Communication since university and this has been further strengthened by my experiences with clients on the acute wards. I am particularly interested in the psychological impact of having a disability.

Permanent link to this article: http://www.talklink.org.nz/index.php/2014/02/26/communication-technology-and-mnd/

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